Waldenstrom Unplugged : Words Matter

Waldenstrom Unplugged: Words Matter brings together expert clinical insight and lived patient experience to make Waldenstrom macroglobulinemia (WM) clearer, less isolating, and easier to navigate.

What does a rare diagnosis really mean for your everyday life - and do you need treatment straight away?

This episode explores the realities of living with WM, from diagnosis and active monitoring to treatment decisions, symptoms, quality of life and finding support within the WM community.

📌 Big takeaways from this episode:

•  “Watch and wait” doesn’t mean "doing nothing"! 
•  Your symptoms matter as much as your numbers. 
•  Rare doesn’t mean you have to face it alone. 

This podcast is for general informational and educational purposes only. It does not constitute the practice of medicine, and listening does not create a doctor-patient relationship. Waldenstrom macroglobulinemia affects everyone differently; nothing heard on this show should replace the personalized advice, diagnosis, or treatment plan provided by your own oncologist or healthcare team. Always consult your doctor before making medical decisions 

If you have a question for Shirley or Bob, you'd like featured on an episode, please email: [email protected] - Remember to keep your questions broad and educational rather than sharing specific medical details.

WITH SUPPORT FROM IWMF
About the IWMF The International Waldenstrom Macroglobulinemia Foundation is dedicated to supporting and educating everyone affected by Waldenstrom macroglobulinemia while advancing the search for better treatments and, ultimately, a cure.
Please visit: https://iwmf.com/

YOUR HOSTS
Professor Shirley D’Sa: Professor Shirley D’Sa is a leading haematologist at University College Hospital in London, where she runs a specialist Waldenstrom macroglobulinemia service. She is widely respected for her WM expertise, compassionate care, and commitment to helping patients understand both the science and the lived experience of the condition.

Bob Perry: Bob Perry is a WM patient and advocate who brings warmth, candor, and hard‑won perspective to conversations about diagnosis, treatment, and living well. Drawing on his own journey and his support for fellow patients, he helps translate complex information into practical, relatable guidance

Waldenstrom Unplugged: Words Matter brings together expert clinical insight and lived patient experience to make Waldenstrom macroglobulinemia (WM) clearer, less isolating, and easier to navigate.

The episode introduces Waldenstrom macroglobulinemia (WM) through patient advocate Bob Perry’s 11-year journey, highlighting how varied and uncertain a WM diagnosis can be. Professor Shirley D’Sa explains that WM affects everyone differently, with some patients needing treatment quickly and others remaining on active monitoring for years. The episode emphasizes the importance of reliable, WM-specific information and specialist support, while encouraging patients to focus not only on future treatments and research, but also on living as well and as fully as possible today.

📌 Big takeaways from this episode:

• WM is profoundly individual.
• The right information and people matter enormously.
• Focus on living well now, not just on finding a cure. 

This podcast is for general informational and educational purposes only. It does not constitute the practice of medicine, and listening does not create a doctor-patient relationship. Waldenstrom macroglobulinemia affects everyone differently; nothing heard on this show should replace the personalized advice, diagnosis, or treatment plan provided by your own oncologist or healthcare team. Always consult your doctor before making medical decisions 

WITH SUPPORT FROM IWMF
About the IWMF The International Waldenstrom Macroglobulinemia Foundation is dedicated to supporting and educating everyone affected by Waldenstrom macroglobulinemia while advancing the search for better treatments and, ultimately, a cure.
Please visit: https://iwmf.com/

YOUR HOSTS
Professor Shirley D’Sa: Professor Shirley D’Sa is a leading haematologist at University College Hospital in London, where she runs a specialist Waldenstrom macroglobulinemia service. She is widely respected for her WM expertise, compassionate care, and commitment to helping patients understand both the science and the lived experience of the condition.

Bob Perry: Bob Perry is a WM patient and advocate who brings warmth, candor, and hard‑won perspective to conversations about diagnosis, treatment, and living well. Drawing on his own journey and his support for fellow patients, he helps translate complex information into practical, relatable guidance

Waldenstrom Unplugged: Words Matter brings together expert clinical insight and lived patient experience to make Waldenstrom macroglobulinemia (WM) clearer, less isolating, and easier to navigate.

Here’s a quick taste of what’s coming up in this series. Be sure to hit Follow or Subscribe in your podcast app so you never miss an episode when we launch on September 15th.

If you have a question for Shirley or Bob, you'd like featured on an episode, please email: [email protected]

 
WITH SUPPORT FROM IWMF
About the IWMF The International Waldenstrom Macroglobulinemia Foundation is dedicated to supporting and educating everyone affected by Waldenstrom macroglobulinemia while advancing the search for better treatments and, ultimately, a cure.
Please visit: https://iwmf.com/

YOUR HOSTS
Professor Shirley D’Sa: Professor Shirley D’Sa is a leading haematologist at University College Hospital in London, where she runs a specialist Waldenstrom macroglobulinemia service. She is widely respected for her WM expertise, compassionate care, and commitment to helping patients understand both the science and the lived experience of the condition.

Bob Perry: Bob Perry is a WM patient and advocate who brings warmth, candor, and hard‑won perspective to conversations about diagnosis, treatment, and living well. Drawing on his own journey and his support for fellow patients, he helps translate complex information into practical, relatable guidance